Chordoma Foundation

Personalized medicine comes to chordoma

Featured Researcher: Mrinal Gounder

Genetic profiling of a patient’s own tumor could open new avenues for treatment with targeted drug therapies

Gounder, MrinalA new clinical research program at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York is bringing personalized medicine to chordoma patients for the first time, with the support of a grant from the Chordoma Foundation.

Personalized medicine is the use of an individual’s genetic profile to help guide medical decisions. It has shown great promise in identifying effective treatments for patients with other types of cancer, but has not yet been systematically evaluated in chordoma.

Now, MSKCC Medical Oncologist Mrinal Gounder is leading an interdisciplinary team that aims to create a genetic profile of the tumor of each chordoma patient seen at MSKCC. Armed with that information, physicians and patients can tailor a course of treatment that could include drugs that specifically target genetic mutations in that particular tumor.

“We’ve been stuck in a one-size-fits-all approach to treating chordoma,” Gounder says. “Surgery and radiation, the current standards of care, work well for some people but not for others, and unfortunately we don’t have proven chemotherapies yet. But there are many exciting new gene-targeting drugs out there – existing drugs that have shown good results for people with other rare cancers, as well as promising new drugs that are now in clinical trials – that might be very beneficial for some chordoma patients.”

By mapping the genetic profile of an individual’s tumor we can discover why it is growing and whether there are certain genes that we might be able to target, he explains. The fact that chordoma tumors typically grow relatively slowly presents a window of opportunity for many patients to explore this option before resorting to surgery or radiation.

Creating a genetic profile requires just a small tissue sample from a chordoma tumor, often from a recent surgery or biopsy. Using state-of-the-art techniques, researchers capture DNA from the tissue and look for genes that are “switched on” in the tumor and could potentially be switched off by targeted drugs. The MSKCC chordoma treatment team discusses the results with each patient and, together with the patient, determines the best course of action. One of the key aspects to qualify for this study is that patients need to have the disease for which they are seeking active treatment. Patients who were previously treated, have no evidence of disease, and are currently under close follow-up would not immediately benefit from this genetic profiling.

The Chordoma Foundation has provided a $50,000 grant to Gounder and his team to conduct genetic profiles on the tumors of up to 35 chordoma patients to see if tailoring treatment based on the unique profile of a patient’s tumor actually leads to better outcomes. The first patients were profiled this spring.

“This is an exciting opportunity for chordoma patients who are interested in exploring treatment options, and can accelerate the pace of drug discovery for this disease,” Gounder said. “And it is all happening because the Chordoma Foundation, patients, and families have been pushing for this.”

Patients eligible to take part in this genetic testing, include those with newly diagnosed or recurrent chordoma for whom surgery or radiation therapy is either unappealing, unsuccessful, or not possible. Patients must be well enough to participate in a clinical trial if indicated by the findings and must live within a 2-3-hour driving distance of New York City (or be willing to relocate for several months) for follow-up care. If interested in participating, check with your insurance company to determine if treatment at MSKCC would be covered. For more information, contact the Physician Referral Service at (646) 497-9067.


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